Wednesday, March 23, 2011

Snapshots: Intimacy with Children and Autism

Not even peanuts, no pretzels anymore. Years ago we had meals on airplanes.  For free.  Perhaps it's for the best that they cut these out.

But I can listen to music, now that my year of mourning is over, and rather than pack breakfast, last minute I add Bryn Terfel and Renee Fleming to my ITunes library.

And for the first time in months,
there's that  . . . calm.

Except I miss FD.

We're on separate vacations because I had a job in the states and he has a sick relative in London, a stop-over to Israel. He left almost a week ago. Neither of us anticipated how it would feel, the apartness. We talk about separation being good for a relationship, but there is such a thing as too much of it, especially if you go into it thinking that it’s no big deal.

We’re winding it down. I’m on my way home, ready to board. My 4-day work vacay is over.

Dare I share all of this with you?

When your children are close to you and they marry people from out of town, and they settle there, in someone else’s home town, you feel like a loser. Another couple, other parents your age, people who could have been classmates, lovely though they may be, are the winners, and you and your partner, the losers.

And when the grandchildren arrive, for the first time in your life, if you’re someone like me, you feel an emotion that is highly disconcerting. Even though you’ve never felt it before, never had it, and certainly aren’t consumed with it, rarely even think about it, you know it right away. It's jealousy.

I’ve kvetched about it before, and my kids think I do it to guilt them, but nothing could be further from the truth. I only write about it because it’s so rich, seriously. Visiting adult children is so rich emotionally, seeing them flourish, raise their own families, struggle with their work and relationships, making it, not without stress; this is so full of emotional cream that swooping in from the outside and not writing about it, frankly, feels wrong.

But it went too fast. Time to get home.

FD is preparing for his return trip, too. There are so many miles between us, the time zones are so different, that we haven’t really talked much, not at all, in over a week. Not much texting, hardly an email, and it hasn't helped that the phone I rented for him, the pelephone, is garbage, a very old Nokia.  Perhaps the first Nokia ever made, first generation. Or it's been in the Kineret.

Which is why he answers my call to his IPhone on the first ring, asks how I’m doing, how are the grandchildren. I want to tell him everything about each child, each engaging, miniature package, but instead wax on about what they are not, and how our lives could have been so very different, so much more challenging, if they were different, or if our children, as children, had been differently blessed.

I tell him that our daughter-in-law is reading up on autism. She runs a summer project with kids who have special needs and has picked up some library books. These are on a table, whispering to me. I knock off the Greenspan/Wieder book, Engaging Autism-- the Floortime approach-- in an afternoon while the little ones nap. The model, DIR, uses the language of my generation: Developmental-Individual differences-Relationship therapy. Empathy is the active ingredient. This opens my eyes.

I begin to spin.

If you use
(a) sensory integration; and add
(b) DIR; then mix a heavy dose of
(c) Lovaas and Rimland's ABA, Applied Behavioral Analysis;
you would have
(d) a biological-psycho-social-developmental-relationship- empathy-based therapy for children on the autism spectrum.
Perhaps these therapies overlap already. I'm not an expert in any of them, but know that some of us use bits and pieces universally with adults and children, not even realizing their efficacy for autism. I know nothing, is the truth, about the spectrum, am taking what I read at face value, hoping my readers will teach me.

“There’s so much I don’t know,” I lament to FD.

“Reading is so humbling, makes me feel so remiss. It has been too easy, just saying, That’s not my specialty, autism. Reading about it is a reminder that it is so much harder for some parents, we had it so easy, have it so easy, pooh, pooh, pooh, kineye-in-harah (a magic incantation to ward off the evil eye) relative to some.”

FD is quiet.

Then we move on, talk about each of the grandchildren, their special traits, their individuation, how different one is from the other. We talk about how they relate as siblings, and how they have gradually come to trust us, people who pop in and out of their lives for these relatively short, but intense visits. Relating to little people who are more than 50 years our junior highlights how humans grow older, but in certain ways, tucked in that gray matter, remain children.

Were it not for Google-video chat this slice, these cells, would get no exercise at all. And this way the little ones think we’re on television, on par, or at least in competition with Dora the Explorer.

But without in vivo face time, human to human, nose to nose, it wouldn't mean a thing, not to me, anyway, because the language children speak is play, naturally, and if a person likes to play, then children will follow along, any Pied Piper will do. So I tell FD that we danced, we sang, we ran. And I taught the five-year old how to sit full lotus, something most people can’t do, but she’ll be able to do now, forever.

What wows me the most, I tell him, isn’t the play, and it isn’t the way they interact with one another (and with their parents). It is the intensity of relating, the eye contact.

These kids look at me as if they’re working on memorizing my face, as if they need to tell me that they care, they’re interested. They grab my chin and tell me what they want because they trust this will work.



And yes, they negotiate for me to stay, each time. “Miss your flight,” is one of our jokes. “Just miss it.”

It is miraculous, 
that a child can make a parent, 
a grandparent, feel so unimaginably special. 
When a child looks deeply into your eyes 
you think you must be the only one who matters,
if only for that moment. And it is true.


And when they look away, you wonder what is going on in there.

So we travel for those moments, to find the child is desirous of intimacy. Even at two years old, probably at birth, a child is desirous, has a will to love and be loved, a self wanting to share, for all we know. And when this happens, this intimacy, when we are the object of this desire, it feels deliciously unexpected, precious not only for us, but for the little person, too.

When it doesn't happen, not right away, as is characteristic of autism, it can be terrifying to those who have waited nine months for the arrival, who will continue to wait for the full meal.

When I went to graduate school, even though behavioral therapies were popular, researchers of the psychiatric bible still called the disorders on the autism spectrum pervasive. The prognosis was thought to be bleak and I couldn’t do it, couldn’t go into early childhood work because I knew that you can’t be an early childhood expert and not take on pervasive developmental disorders.

And I think I knew it would drain me. Funny how abuse, neglect, exploitation, trauma—this doesn’t burn me out.  All week long, heart wrenching stories.  But thinking of a childhood disorder as pervasive, a condition that will not change, had an aversive effect. The Greenspan book wasn't around and nobody spoke of sensory integration, nor the refined reward and repetition application of Lovaas and Rimland.

Autism is not the hopeless challenge they made it out to be thirty years ago, not according to these pioneers. Kids with impairments in social functioning are neurologically different, require alternative stimulation, a more quiet, individualized approach. Engaging them isn’t easy, but it isn’t impossible. Not surprisingly, it’s all about empathy, learning who the little person is, feeling his feelings, and relating on his level. And that need, the need for intimacy, when it is tickled, awakened, coaxed, tested, is universal and is the way to healing, if there is one.  If I am to believe what I read, and I do.



Ah, we’re about to land. And always a sucker for the arias, I’m listening to Le Nozze di Figaro. But they’re telling me to put away all electronic devices, so just one more snapshot. I'm home.

That's my house.


therapydoc

18 comments:

Leora said...

If you want a fabulous, hopeful book on autism, read: Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders by Dr. Kenneth Bock.

You can also find videos of him online being interviewed. He talks about the gut-mind connection, how the impairment of these kids' guts is impacting their brains. The wonderful part is many kids have gotten better with his methods (diets that avoid gluten, dairy and include probiotics like cocokefir).

therapydoc said...

Thanks!

kg said...

A lovely home you have!
My husband, son, nephew, and a friend's son are all "on the spectrum"...treating as an individual, with empathy, engaging in a way that is comfortable to them....they are so much more than the early picture of autism. I know there are those that are much more difficult to reach, but like so many things when you are in it, it isn't so horrible. It's life!
I am glad for the great variety of people in the world, but it would be nice if the world could tolerate and be gentle to those that don't meet other's expectations. There is room for, and we need what people on the autistic spectrum have to offer.

"WIRED" magazine once postulated that there are more autistic children in the US now because of "Geeks Mating". :) I think there may be some truth to that.

Retriever said...

I have a kid (now 18) on the spectrum and they DO want to be intimate with people but they relate in different ways and their nervous systems (especially when very young) are hypersensitive one minute, missing cues the next. My son was loving, affectionate, bonded to us, his family and to people he knew, very physically affectionate, but he didn't make much eye contact, and he was anxious and a whole slew of oher things. He wasn't diagnosed til he was 7, and we didnt believe it because of the stereotype that autistic kids aren't affectionate, don't relate to others. They do. They pick up on some signals more acutely than the neurotypical. And miss others. Latest research says that a protein problem is to blame for the signalling difficulties of the cells in the brain.

As to what helps kids with autism? Pets, pets and more pets. THe bigger and furrier the better. Not fish or birds (sorry, I like fish too, but you can't hug one). Kids who have dogs and cats when very young are much less likely to develop allergies to them anyway. In particular I recommend a large dooffussy golden retriever like the one we had for 13 years. My son used to say that he was the best psychiatrist ever.

An animal that will not EVER be vicious, that will take erratic behavior, that will provide unconditional love, that can be trained, that the child can learn to be considerate of and learn to empathize with. Easier than people. Kinder than people. More loyal than people. Warm, cuddly, and someone to confide in.

Any program for autistic kids should have a therapy dog, but it should be just roaming around, not formally providing "therapy".

ALso, time outdoors is really important. AUtistic kids often have major sensory issues and find the sunlight too bright, everything too much, so desensitization is important. Swimming is wonderful therapy, but better outdoors in the ocean or a lake than in some disgusting chlorine stew of an indoor pool. The great thing about swimming everyday is that it keeps the kid clean (many kids on the spectrum hate bathing at home, but enjoy splashing in a pool or the ocean). Vitamin D from the sun (no sunblock--paranoid parents have deprived kids of one of the most important nutrients. Also, for it to be absorbed, the kid should not immediately wash after being in the sun (it's synthesized from oils on the skin). If it helps depression, it probably helps mood in autism.

I suppose it would depend how high or low functioning the kids were. I only know high functioning autistic kids. One would need (with both groups) to be alert to preventing self-harm which is exacerbated by anxiety in new places, and around more people. ALso, any group program with autistic kids (high or low functioning) must take account of the fact that each individual child has numerous perseverative behaviors (some odd, some more normal seeming) that a group leader messes with at their peril. FOr example, when my own kid used to get annoyed at a peer, he would go and pace at the back of the classroom to calm down. If one tried to stop him, he would get mad. The pacing calmed him down. But other kids will have perseverative behaviors that can be dangers (head banging or hair pulling or worse) that one has to strategize to contain or remove from the group.

WIth high functioning autistic kids, they very quickly figure out that if they don't like an activity they can act up and get removed from the activity by a less than crafty aide, so strategies to keep a kid involved in the group activity (unless truly agitated or aggressive) will be important.

Retriever said...

I don't know any people whose autistic kids have got better on diet alone. I know many parents in denial who try first one diet or fringe treatment after another in an attempt to avoid putting the kid in Special Ed. Sometimes, if the kid isn't autistic but merely ADD or aggressive and somewhat non-verbal, the extra attention, and the lack of preservatives (good for anybody) helps a little. I mean, a healthy diet helps everybody's mood and behavior, but it can't cure autism.

I know many very peaked looking kids whose parents have deprived them of wheat and dairy products and fed them a fairly disgusting diet (from the standpoint of a typical child) in well meaning attempts to help their disorder. I worry about this when the kid is small and doesn't eat well, lest it stunt their growth.

In my experience, my kid had such decided views on diet as it was, that it was all we could do to EXPAND his horizons gastronomically, not limit them further. He eats a very varied diet now and is over 6/1'so now that he's an adult, I'd be more willing to experiment with diet (not wanting to stunt growth).

I'm no expert, obviously. I did nurse him on demand for 2.5 years (no formula,ever, nursed every couple of hours or so), and cook everything from scratch, grow organic veggies, eat a fairly diverse diet, tho plenty of meat. He's highly verbal, has friends, is writing a novel, devoutly religious, chivalrous, but we don't know what he'll end up doing.

I love him exactly the way he is. He is brave, even if he does have a ferocious temper sometimes. He feels for the underdog, is fearless about speaking his mind, empathizes with suffering people and animals, has an ironic sense of humor, loves RPGs, Greek and ROman history, critiques the sermon on Sunday quite cruelly at times but then can be friendly to the person who gave it...He's odd, but I'd rather odd than a schmoozing future insider trader like a lot of the other kids in my neighborhood...

therapydoc said...

Ah, just what I was looking for. Thank you so much, Trieve
And the house needs a lot of work, KG.

Glimmer said...

So very true about children wanting love, wanting so much to connect. We lived a four-hour drive on rural roads from all of our relatives. But we visited enough for those connections to be made. When my favorite aunt died at 95, we found a packet of letters and many were from me. I would write a sentence or two about what was going on with me, then would start the asking. "Please come visit. Please ask Miss Rose (grandmother) to visit too. I wish you would visit. Maybe you could come to see my play...." It meant more than I can say to see these. I was so very open back then. I had no idea, seriously, that I had ever been that way. Thanks for the reminder, too!

Jonathan said...

This was beautiful (and sad, for me). April is autism awareness month - Light It Up Blue on April 1-2!. Compassion and understanding are key.

Margo said...

That was me, btw

piliana72 said...
This comment has been removed by a blog administrator.
Bea said...

You know, I live allllll the way across the country from my brothers and their young children. It breaks my heart that I'm not involved in their day-to-day lives.

BUT they are SO excited when I come visit: Auntie B brings presents! Auntie B lets us wake her up by jumping on her bed in the morning! Auntie B likes to build forts! Auntie B said she'd camp out in the backyard with us!

Because I visit once or twice each year, I can give them 110% every time.

If I lived there, my visits wouldn't be as special. If I lived there, I wouldn't get huge bear hugs every day. If I lived there, I'd never hear a little voice on the phone say "I miss you Auntie B."

The Rebbetzin's Husband said...

Wow, what a post. Thank you, especially for the part regarding grandparents/grandchildren living in separate cities. As a non-New York rabbi, I saw this a lot, on both sides.

Gringo said...

Retriever:
As to what helps kids with autism? Pets, pets and more pets. THe bigger and furrier the better. Not fish or birds (sorry, I like fish too, but you can't hug one). Kids who have dogs and cats when very young are much less likely to develop allergies to them anyway. In particular I recommend a large dooffussy golden retriever like the one we had for 13 years. My son used to say that he was the best psychiatrist ever….Also, time outdoors is really important.

The Horse Boy: A Father's Quest to Heal His Son is a book that lends support to Retriever’s testimony. I picked up the book at a remainder bin. The father found out by chance that his autistic son responded well to horses. He also found out that taking his son outside for a walk was a good way to calm him down. For what occurred later, I suggest that those interested read the book. As the author-father states, there is no guarantee that what worked for his son will work for all or even most autistic children, but horses and Mongolian shamans did work for him.

When a country cousin and her husband visited me last year, I mentioned the book to them, as they have had horses for decades. My cousin has had horses since she was a child. The reply I got surprised me.

“Yes, we know that autistic children respond well to horses.”

Turns out that a teacher of special needs children had taken her students to visit my cousins, as they have a fair amount of animals on their land. Dogs, rabbits, cats, horses. An autistic boy gravitated immediately to one of their horses. He started talking to the horse, which my cousins were told was the first time the kid had talked in over a year.

My cousin told the teacher that any time the boy wanted to visit the horses, he was welcome to come over. The teacher’s response was negative, which teed my cousin off.

Retriever said...

Liked your story, Gringo, tho I wonder what was up with that teacher! Equine therapy is fantastic for so many disabilities, but it doesn't have to be formal. I suspect that some teachers are scared off because of the liability: given the erratic behavior of many kids on the autism spectrum, they may fear their getting hurt if not properly supervised.

My kid was at a school that put a lot of effort into having the kids help look after and ride horses. He complained that they didn't get enough time with them still, but that was because he had the model of his own dog at home...

The basic problem with most pet therapy is that it is a good thing, but is too little. Kids (all kids) benefit from physical contact with animals, but they should also take care of them, and just have them around and underfoot, and in sight. Part of the benefit of animals for a kid on the autism spectrum is that a child learns to intuit their feelings without them talking. And yet because an animal doesn't talk, they don't overstimulate or nag or badger a kid. Yet they will nip or bite or kick if teased, so there's a check on bad behavior. One has to be very careful with horses because riding is dangerous. But the rocking motion is very soothing. Especially given how many kids on the spectrum rock to calm themselves.

Eva Lee Najubez said...

Wow, such a wonderful post, and to think I came across it completely by random.

I grew up with a little brother who had severe autism as a young child, no eye contact, lots of head banging, zero communication, all the stereotypical behaviours you'd expect. We had very little information to work with in the beginning when it was first diagnosed, except for some very random attempts by provincial health board at providing him with some sort of therapeutic group classes where they spent an hour introducing 12 autistic children in song and then saying goodbye in song. In general, in the beginning it was just my parents seeking out as much information as possible, and all they really knew was that it required a 40 hour/week behavioural therapy intervention, but the amount of funding provided for him by our province was barely enough to last a week of therapy.
And so my parents pretty much took it upon themselves to find ways to help him develop any skills he could. And I, being 7 years older, became fiercely protective of him, when my parents were not around I took care of him and worked with them to help him overcome every limitation. We looked for thousands of ways to finally get him to look us straight in the eye. The most amazing part was that 1000s of flash cards and hundreds of hours into it, he started to really progress. It really taught me to appreciate every tiny achievement that children make, even something as simple as understanding the idea of the word stop. My teenage years were pretty much dedicated to helping my brother, rather than being a teenager, but I found happiness, in seeing him become the most highly functional person he could be. It was nothing but pure love and dedication that pushed him higher than anyone who knew him as a child to go. He's a teenager now, and I can't say that it's easy now, perhaps in some ways its worse because its a new stage where he doesn't know how to deal with his anger, but he has full contact with his outside world, he recently shocked my family when he pulled an April Fool's joke on my mom, we weren't aware he had the ability to understand that. More than anything, it's given me the gift of empathy, because he functions from a very unique perspective. In order to deal with him on a daily basis, you have to understand his immense fears of change, how he only thrives in environments of rewards, and regresses with any forced discipline for negative behaviours, and most of all his dire basic need of acceptance and love from people around him. He actually is able to pick up on body language of when someone is angry at him, or doesn't like him. I didn't think that something like that could ever be possible with him, and yet somehow he's exceeded every barrier anyone ever told us he would never cross when he was first labelled as autistic. While I'm at school, he writes me messages on skype asking when I'm coming home. All in Caps of course. with no periods, but he's an impeccable speller, and he has the same artistic and creative abilities as I did as a child, which proves to me that he's definitely blood related, though slightly better looking.

Syd said...

Thanks for this. I don't know much about autism but do know that we all want love.

thebeautyinsiders said...

My Friend's niece is autistic. I was not knowing how to react with her. Her name is Stella, she is 6 years old. I think Showing some Love is the only way to deal with autistic children... Thanks!

therapydoc said...

Thanks beauty insiders. That was beautiful.